Healthy Families » Nikehttp://www.ohsu.edu/blogs/doernbecher
Pediatric Health News From OHSU Doernbecher Children's HospitalWed, 03 Jan 2018 19:55:13 +0000en-UShourly1http://wordpress.org/?v=4.2.192015 in review: It’s all about the patientshttp://www.ohsu.edu/blogs/doernbecher/2015/12/22/2015-in-review-its-all-about-the-patients/
http://www.ohsu.edu/blogs/doernbecher/2015/12/22/2015-in-review-its-all-about-the-patients/#commentsWed, 23 Dec 2015 01:11:29 +0000http://www.ohsu.edu/blogs/doernbecher/?p=5937Read More]]>Social media is great for connecting families, patients, employees, donors and community members with one another and with the hospital as a whole. We love sharing Doernbecher stories and news to help foster a sense of community and provide a space where folks can support one another, get advice from experts and learn how they can give back.

Below you’ll find this year’s most-read blog posts. Happy reading!

1. Meet Hope, Doernbecher’s hospital facility dog
Our chief canine officer, Hope, was a hit from the moment she stepped her paws inside Doernbecher. This post explains more about her training, her personality and how she’s bringing hope to our halls.

3. Isaiah’s Doernbecher story
Isaiah’s mom, Melissa, shares what it was like discovering her son had a brain tumor and offers tips for parents (stay away from Google!) who are going through similar challenges.

4. Once upon a time: Mae Lin’s Doernbecher story
You’ve probably heard Mae Lin on the radio! She was born when her mom, Dr. Dawn Nolt, was only 28 weeks pregnant. Dr. Nolt walks us through what it was like being both a mother and a doctor in the hospital where her daughter was treated and shares her pint-sized hero’s NICU story. Click here to listen to Mae Lin’s radio spot!

8. Our lemonade experience: the Charles family’s story
Doernbecher Freestyle patient-designer John Charles was diagnosed with Crohn’s Disease last year. His parents, Tony and Mary Charles, explain how his diagnosis impacted their family and why they’re so committed to building awareness for others dealing with Crohn’s. Fun fact: John Charles can swallow seven pills at once!

]]>http://www.ohsu.edu/blogs/doernbecher/2015/12/22/2015-in-review-its-all-about-the-patients/feed/0Behind the scenes: Doernbecher Freestyle XIIhttp://www.ohsu.edu/blogs/doernbecher/2015/10/22/behind-the-scenes-doernbecher-freestyle-xii/
http://www.ohsu.edu/blogs/doernbecher/2015/10/22/behind-the-scenes-doernbecher-freestyle-xii/#commentsThu, 22 Oct 2015 17:54:31 +0000http://www.ohsu.edu/blogs/doernbecher/?p=5778Read More]]>Being nominated and selected to work on the Doernbecher Freestyle collection is a once-in-a-lifetime experience – both for our patient-designers and for the Nike employees chosen to be involved in the program. We sat down with some of folks who helped make this year’s collection magic happen to see what their experience has been like thus far.

***

Interviewees and patient designers

Andrew Winfield, John’s Nike team

China Hamilton, Jacob’s Nike team

Hingyi Khong, Lizzy’s Nike team

Jonathan Johnsongriffin, Kian’s Nike team

Megan Collins, Emory’s Nike team

On being selected:

“I was ecstatic [when I found out I had been nominated]. It’s probably been one of the best experiences I’ve had so far. I’m from the area, so I’m familiar with Doernbecher and I was really excited to be able to work with a program that benefits the hospital. What they do is amazing – this is the highlight of my year.”–Megan Collins

“I had heard about the program beforehand, and I was so excited!”–Jonathan Johnsongriffin

On working with the patient-designers:

“For this project, it was all about John and what he wanted. He already had his ideas – he was excited and knew what he liked, so it was easy for us as a team to grab material and get this whole project together. His message is ‘stomping out Crohn’s Disease,’ so that was a big part of the messaging behind the shoe. When we showed him the initial sample, he had a big smile on his face – that was really gratifying for me and for our team. John has been a real trouper; he has a quiet strength to him and I learned a lot about him from how he dealt with this whole process.”–Andrew Winfield

“It’s been amazing working with Lizzy. I guess the word I would use to describe Lizzy is ‘particular.’ She’s confident, very sure of herself – she knows who she is and what she likes. It’s been great to see self confidence in someone so young. I was lucky enough to go out to The Dalles to hang out and watch Lizzy’s dance recital, where I saw her perform with girls a year older who practice three times as much as her. She was holding her own – she’s obviously a real talent! Seeing the context of her inspiration was really helpful for this project.”–Hingyi Khong

“Emory was great! When we were briefed on her design inspiration, we knew we’d never have a chance to do something like that again. She’s such a sweetheart and she has such a fire inside of her. She’s just amazing. Seeing that smile – that makes it all worth it.”–Megan Collins

“Jacob is such an inspiring kid; I felt very fortunate to be paired with him. He has really amazing taste and sense of style – it was a dream to work with him. He kept asking our team, “Why are you guys so awesome?” Giving us the motivational speech! He’s the sweetest kid, and he’s super smart. He has a very bright future in front of him.”–China Hamilton

“Kian kept us on our toes! He really loves shoes, and he picks up on every little detail. Every time I come see him, I make sure I wear something cool – he’s like a little sneaker head. He knows so much about shoes and was naturally curious about the design process – his curiosity made me more excited to work on the project. We were able to bring his story to the shoe, and getting that story out of him was really interesting. Throughout the process you can see how hard he’s had to fight. Hopefully this project and this shoe will inspire people to win the day, every day.”–Jonathan Johnsongriffin

Why the Doernbecher Freestyle program is so special:

“Overall it’s a project we can really connect to that’s different from our everyday tasks. It’s kind of a different feeling than just creating a product – you create connections with the family. The program is something you can really get behind, something you’re proud of (in an entirely different way) when it’s finished.”–Hingyi Khong

Learn more about our incredible Doernbecher Freestyle patient-designers here, and read a blog post by Nike graphic designer Carson Brown, who worked with Isaiah, here. We hope we’ll see you at this year’s collection reveal and auction on October 23!

]]>http://www.ohsu.edu/blogs/doernbecher/2015/10/22/behind-the-scenes-doernbecher-freestyle-xii/feed/0Isaiah’s Doernbecher storyhttp://www.ohsu.edu/blogs/doernbecher/2015/10/20/isaiahs-doernbecher-story/
http://www.ohsu.edu/blogs/doernbecher/2015/10/20/isaiahs-doernbecher-story/#commentsTue, 20 Oct 2015 16:26:10 +0000http://www.ohsu.edu/blogs/doernbecher/?p=5753Read More]]>Last year, Isaiah’s Neumayer-Grubb’s family discovered that he had a brain tumor that would need to be surgically removed. We sat down with his mom, Melissa, to learn more about Isaiah and his Doernbecher story.

How would you describe Isaiah?He’s a charismatic little guy who makes friends wherever he goes. He shines at everything he does and loves to stay active. Isaiah walks into a room and you can feel his presence – he has this wild sense of humor that makes you want to be around him all the time, just to see what he’ll say next. He fills your soul with happiness.

When did you know something was wrong?
Isaiah was getting headaches that were becoming more frequent – about three a week. His primary care provider referred him to a neurologist, who thought it was just childhood migraines and didn’t seem super concerned since Isaiah was otherwise very healthy and still taking part in sports, in dance and in school.

Just in case, though, the neurologist recommended an MRI. We went in on a Friday and were told Isaiah would be in and out in 45 minutes. He was back there for about two hours. We knew that day that something was wrong, but didn’t hear back until the following Monday that he had a lesion on his brain.

I remember trying to write down the word ‘lesion’ on a piece of paper, but in that moment I couldn’t spell it – I just couldn’t wrap my head around it.

The space in between getting this news and going to the hospital was the scariest, really. We were Googling “lesion on brain” and getting search results ranging from “it’s nothing” to “he could die.” That was the last time I Googled anything.

Meeting Dr. Nate Selden
Our neurologist referred us to Dr. Selden, whom he called the “best of the best.” My husband and I were super nervous – you don’t really know what to expect when you’re talking to a neurosurgeon. But the moment we walked into Dr. Selden’s office, we felt like we already knew him. It wasn’t what I expected at all – we felt instant comfort and instant safety. He really is incredible.

At this first meeting, he told us he believed Isaiah’s tumor wasn’t cancerous and didn’t want to jump into surgery right away. He said he wanted to take it to the tumor board so eight other experts could weigh in.

In the meantime, a sleep-deprived EEG showed Isaiah had been having absent action seizures. At the time, it just seemed like Isaiah would space out and ignore us for 30 seconds to a minute. Once we found out, Isaiah started anti-seizure meds and we made some life changes almost immediately. We went from having a perfectly normal 7-year-old to having a child we had to keep an eye on at all times. He couldn’t ride a bike by himself or even get in the bath by himself. It was very, very surreal.

A week later, we got a call from Dr. Selden’s office that the tumor board was recommending surgery – the tumor was large enough that he and his team needed to determine what it was. I felt like someone was kicking me in the stomach. He explained all of the factors that went into the recommendation and the associated risks and benefits.

Dr. Selden told us he’d be putting together the best team possible for Isaiah’s surgery. They would practice ahead of time on a 3-D model constructed using scans from his MRI.

Brain surgery isn’t without risks – we had to consider possible impacts to Isaiah’s speech and movement of his legs, and we also had to consider the possibility of paralysis and death. We didn’t know what our son’s future would look like with surgery, but we didn’t know what it would look like without it, either. The hardest part for us was that it was ultimately our decision.

The one thing Dr. Selden said that still stands out to me was, “I believe I can do this surgery. I know I can.” I just remember the way his eyes looked when he said that – it was genuine, not cocky. I’m a pretty intuitive person and I had no doubt that he could do it.

We decided to go ahead with the surgery.

Waiting
We scheduled the surgery for October 27, which meant we had about a month to wait. Our family took some time off work to go to the beach for five days, and I decided we were going to live life to the fullest for that month so that if I lost my son, he would go with peace and love, not with fear or uncertainty. We had no control over the situation, so we spent those weeks doing all of the things we could.

Isaiah is a huge Oregon Ducks fan, so we got tickets to a UO game. He always said he was going to play ball with Thomas Tyner someday, not realizing the age difference between him and Thomas. After a family friend told Thomas about Isaiah, he arranged to meet us before the game. He gave Isaiah a pair of his cleats and introduced him to Marcus Mariota. Thomas is truly a fantastic kid – he’s exactly what I want my boys to be like. I want to give his mom a hug and tell her she did a great job!

Our friends got together and planned a Halloween party for Isaiah since he would be missing it that year. More than 100 people came out to celebrate one of Isaiah’s favorite holidays with us.

People were amazing – AMAZING. I can’t put into words how much gratitude and humbleness I feel.

Surgery
Batman was a way of escaping for Isaiah – if Batman could overcome anything, he could, too. On October 27, the day of Isaiah’s surgery, students and staff at his school all wore Batman gear, and the kids in his class wore black and yellow bracelets with Isaiah’s name on it. A lot of our friends and family flew in for the surgery, and they were all wearing Batman shirts. Isaiah was wearing his Batman shirt before he went into surgery. There were probably 30 people waiting with us at the hospital. It was absolutely amazing.

I didn’t realize how terrified I was until they called to say the surgery was complete. I grabbed my purse and backpack to head upstairs and I cried in a way that I’d never felt before – I didn’t know if my son could talk or walk, but I knew he was alive. It was almost like a release of all of this pain and fear.

Upstairs, Dr. Selden came out and said the surgery went great and his team was able to remove more of the mass than they’d anticipated. We were crying and hugging him – even my husband, who’s not a hugger!

We knew the first 12 hours would be touch and go with a lot of neuro checks. Isaiah woke up yelling, so we knew that, despite being really scared, he had the ability to talk.

As a mother, I can see that our time at Doernbecher was incredible. Isaiah just remembers being very angry and confused – he went into surgery feeling fine but no matter how much information we gave him prior to it, he wasn’t prepared for how he would feel afterward. He couldn’t fully grasp it – none of us could.

Isaiah didn’t want to eat or walk. Dr. Selden said if he did, he could go home. He walked around that ICU unit, and people were clapping and cheering. He was still so mad! I’m sure if he knew any bad words, he would have been saying them. Dr. Selden released him to go home that same day, just two days after his surgery.

A brother’s loveWe wanted to prepare our younger son, Jameson, for Isaiah’s arrival – he was 3 at the time. Isaiah had two swollen, black eyes and the cut on his head, plus he just generally looked pretty frail. My brother Tommy told Jameson that the doctors had to fix Isaiah up, and he would be fine – Jameson pushed himself out of Tommy’s arms and followed us back. He jumped up on the bed to lie next to Isaiah. My two crazy, hyper, ridiculously energetic boys were lying there together, holding hands and not saying a word. It was amazing. I could see the color come back into Isaiah’s face.

How do you explain something like this to a 7 year old?
We always made a point to tell Isaiah the facts – what we knew for certain – about what was happening. My husband and I would try to process the information we were receiving before having a conversation with him. We wanted to first handle our emotions so we could focus on helping him handle his. At the initial appointment with Dr. Selden, Isaiah just knew we were there to get his headaches checked out.

There’s no sugarcoating with Isaiah – downplaying the news actually makes him nervous. He’s very intuitive, so you have to be straightforward with him. Dr. Selden picked up on that immediately. There was also talk of Isaiah getting an Xbox if he did indeed need to get surgery, which was looking unlikely at our initial appointment.

After finding out the tumor board had recommended surgery, we had another appointment with Dr. Selden. We sent Isaiah out of the room to ask the hard questions (this was something we learned early on: Always bring another adult to appointments with you so your child can leave the room when necessary).

Once we had made the decision to go ahead with the surgery, we sat Isaiah down and told him. We compared the lesion to a freckle on Isaiah’s brain, and said we’d heard that freckle was what gave Batman his superheroes. Isaiah had a lot of questions – Is Dr. Selden going to have to cut open my head? How big will it be? Will they shave my head? At this point, it dawned on him that he just might be getting that Xbox!

He seemed completely fine with the surgery at first, but four or five days later, the fear kicked in. We spent the next few weeks answering his questions (and writing down the ones whose answers we didn’t know so we could find out) and trying our hardest to be calm.

A lot of waiting areas at Doernbecher have arts and crafts areas, which was a lifesaver on so many different occasions. In fact, he and my 19-year-old daughter made a necklace together right before Isaiah went into his surgery.

What other advice do you have for other families facing serious health problems?
That’s a tough one, because I get to say this being on the other side. We’re very lucky. I think it changes you – you learn how to live in the moment. I faced the possibility that I could lose my kid, and I made a conscious decision not to think about that every day (though that’s not to say it didn’t go through my mind every day). You’re thinking about your child’s mortality and you’re watching him face it, too. As a parent, you think a lot about how you would want your child’s last moments to be if these are indeed to be his last moments.

Another piece of advice: No Google. That’s a big one! Google is scary.

Today
At this point, we’re not planning on another surgery. We continue to monitor his seizures and our goal is to get him off of those meds at some point.

Isaiah is really comfortable talking about his experience. He went back to school a few weeks after surgery and answered everyone’s questions, even taking off his beanie so they could see his scar. One time someone unknowingly told him they thought he had something on his ear – he just answered, “Nope. I had brain surgery!”

***

Learn more about Isaiah and the rest of this year’s incredible Doernbecher Freestyle patient-designers here, and read a blog post by one of the Nike graphic designers who worked with Isaiah here. We hope we’ll see you at this year’s collection reveal and auction on October 23!

Last August, she came down with a fever. I gave her some Tylenol and kept a close eye on her. After four days, I took her to the pediatrician, who thought she was likely fighting some sort of virus. It wasn’t normal for Lizzy to have a fever without a cough or other cold symptoms; I figured her little body was trying to fight something, but just didn’t know what.

Two or three days after that, I took her back to the doctor – she still had a fever and was pretty lethargic, just not acting like herself. Normally, she’s pretty dark by the end of the summer, but she looked pale – gray, almost.

Our doctor took and sent out a full bloodwork panel, and she called us that same evening to let us know it looked like Lizzy might have leukemia. Our doctor sent Lizzy to our hospital in The Dalles (Mid-Columbia Medical Center) right away, and from there she was transferred to Doernbecher.

She started treatment about two days after we arrived at Doernbecher, once they had determined what kind of leukemia it was. We were there for eight days, and then we got to go home to start the regular chemotherapy treatments.

What was Lizzy’s diagnosis like for you as a mother? Having worked in a dialysis center, I understood a lot of the medical terms when Liz was diagnosed. It made it much easier to understand everything going on and how things worked.

That said, it all happened really fast. Other than having her tonsils removed when she was 6, Lizzy has always been really healthy and active, so I didn’t expect it to be anything this serious. A few weeks before she was diagnosed, we were in Seaside, where she was competing in a national dance competition. She had complained about some abdominal pain, but we thought it must just be muscle soreness from her swimming and dancing. She’s a busy girl!

We’ve heard Lizzy’s physicians adore her! What was her time at Doernbecher like?

Lizzy really appreciates and likes her doctors. At a recent appointment, we heard that Dr. Lindemulder is a fantastic baker. Lizzy asked her about that, and Dr. Lindemulder promised to bring some cupcakes to her next IV treatment.

During her latent intensification period, which was every other week, we were at Doernbecher spending four to five days inpatient while she got a high dose of chemo. On one of those trips, she was bored – it was getting close to Christmas, and she wanted to be home. Our doctors asked if there was anything they could do for her, and Lizzy asked if anyone could get her a slushy. Dr. Garland went out to 7-Eleven and brought her a slushy. It was definitely a moment she (and I) will never forget!

Where is Lizzy at with her treatment today?

She’s been in maintenance since May. For her, that means she’s taking oral chemotherapy here at home in The Dalles and receiving IV chemotherapy once a month in the outpatient clinic at Doernbecher. That’s what it will look like for the next two years.

Lizzy turned 11 in June, and she just started middle school this fall. She’s playing flute in the band, and she’s back to dancing. She also teaches the little ones to dance tap and jazz. On top of that, she was just elected treasurer for her sixth-grade class and she’s a junior cheerleader. I tell her she needs to slow down!

Our family has become involved in raising awareness about ALL and other cancers that affect both kids and adults. We were involved in the Be The Match Walk+Run at Doernbecher and participated in Relay for Life as well.

What would you tell other parents and families who are going through what your family faced with Lizzy’s ALL diagnosis?

It takes time, and it will get better with time. These doctors know what they’re doing. They will do anything and everything in their power to help your child. Ask them any questions you may have – they will get you an answer. They’re amazing, they know what they’re doing and they will take care of your child.

I want to thank Doernbecher and the whole staff – everyone who has become a part of our lives. We’re very, very grateful for them.

***

Meet Lizzy and the rest of this year’s incredible Doernbecher Freestyle patient-designers here – we hope we’ll see you at this year’s collection reveal and auction on October 23!

]]>http://www.ohsu.edu/blogs/doernbecher/2015/10/16/lizzys-doernbecher-story/feed/0Doernbecher Freestyle: behind the scenes with Nike’s Carson Brownhttp://www.ohsu.edu/blogs/doernbecher/2015/08/28/doernbecher-freestyle-behind-the-scenes-with-nikes-carson-brown/
http://www.ohsu.edu/blogs/doernbecher/2015/08/28/doernbecher-freestyle-behind-the-scenes-with-nikes-carson-brown/#commentsFri, 28 Aug 2015 14:53:55 +0000http://www.ohsu.edu/blogs/doernbecher/?p=5620Read More]]>Being nominated and selected to work on the Doernbecher Freestyle collection is a once-in-a-lifetime experience ­for our patient-designers, but it’s also special for the Nike employees who work with them. We sat down with Carson Brown, a graphic designer working with 8-year-old Isaiah (along with Celeste Rhoads, Aaron Reimer and Sara Cruthers), to learn why this program and this hospital are so meaningful to him.

What was it like working with Isaiah?

When our group first met Isaiah to go over his vision and direction, he had some pretty clear and creative ideas. It was a blast taking his sketches, notes and favorite things and merging them together into something special that ties the collection together. We had a few emails and meetings throughout this project to get Isaiah’s feedback to make sure our team was on track. The end result is something truly special and unique to Isaiah.

One of my favorite moments was when Isaiah came for his photo shoot and saw his products for the first time. His excitement was fulfilling. Another favorite moment was receiving a cool sketch Isaiah made (pictured here at right) that captured our first group meeting.

What was your reaction to finding out you’d be working on this year’s Doernbecher Freestyle collection?

I was pretty emotional. This project means a lot to me and I know it means so much more to the families involved. When our son was born, he was diagnosed with Biliary Atresia, a disease that affects the bile ducts and liver. When he was 8 weeks old, Gibson had what’s known as the ‘Kasai Procedure’ to help repair his bile ducts. Over the next few months, we were in and out of Doernbecher many times and I’d always roam the hallways to get out of the room and get some air. Whenever I’d pass the Doernbecher/Nike display, I’d pause and read the amazing journeys of each child who participated in the project.

When Gibson was 6 months old, he was having some complications. My wife and Gibson were flown down to Stanford to be evaluated for a liver transplant. Within a few days of his arrival there, Gibson received a liver transplant. He’s now a healthy 2-1/2-year old, and we’re very thankful for that special gift of life.

Being a part of the Doernbecher Freestyle project is very special to my family and me. It’s one of the best projects I have been fortunate to be a part of, and I look forward to helping out whenever possible.

***

In the coming weeks, we’ll be touching base with others working on this year’s Doernbecher Freestyle collection to learn what it was like working with Emory, Jacob, John, Kian and Lizzy. In the meantime, you can learn more about all six patient-designers here. Save the date for the big collection reveal at our auction on October 23!

]]>http://www.ohsu.edu/blogs/doernbecher/2015/08/28/doernbecher-freestyle-behind-the-scenes-with-nikes-carson-brown/feed/0Doernbecher Freestyle: A physician’s point of viewhttp://www.ohsu.edu/blogs/doernbecher/2015/08/07/doernbecher-freestyle-a-physicians-point-of-view/
http://www.ohsu.edu/blogs/doernbecher/2015/08/07/doernbecher-freestyle-a-physicians-point-of-view/#commentsFri, 07 Aug 2015 17:07:09 +0000http://www.ohsu.edu/blogs/doernbecher/?p=5565Read More]]>Ten-year-old Emory was diagnosed with advanced chronic kidney disease last year. Her pediatric nephrologists, Dr. Sandra Iragorri and Dr. David Rozansky, were so impressed by Emory’s positive attitude, they nominated her for the Doernbecher Freestyle program.

We sat down with Dr. Iragorri to learn more about Emory.

***

How does the Doernbecher Freestyle program benefit our patients?

Working with world-class sports apparel designers is a once-in-a-lifetime opportunity. Being selected for the program – and then seeing your work of art exhibited for everyone to see – is an amazing way to recognize the strength of what our children have to go through, and what we ask the families to go through. I think it’s a very nice way to recognize how much we value them as people and as families.

It’s also a wonderful way for Nike to give back to their community and to recognize the true spirit of the Northwest, of Portland, of children in general. It’s a very beautiful way to give back.

Why did you nominate Emory to become a Doernbecher Freestyle patient-designer?

Emory is a very lovely and articulate young lady, and she’s very obviously artistic and creative (just look at the kidney-themed drawing she made for Dr. Iragorri, below!). She has a very, very supportive and lovely family. I thought this was a nice opportunity to acknowledge and recognize Emory as a person who’s had to really learn to live with her recent diagnosis – It was like a bomb dropped in her lap, but she’s been extremely brave. She’s been very good about blood tests and daily injections and coming to see us. She just seems to fit the bill!

What do you like about working with kids like Emory?

I like to see them feel better and I like the connections I make with children and their families. This connection is from the heart, and it’s what keeps me going. Plus, kids are fun! You can be silly, and that’s always good.

When he grows up, Doernbecher Freestyle patient-designer John Charles wants to be a pro athlete. (His favorite athlete? Damian Lillard, of course). He enjoys being outside, hiking and spending time with his dog, Teagan. Though you wouldn’t guess it by looking at him, John was diagnosed with Crohn’s Disease last year.

When your 9-year-old child becomes progressively ill, is not eating and is losing weight, feels constantly tired and listless, is sent urgently to the hospital by your pediatrician and is subsequently diagnosed with a lifelong, chronic, and incurable illness that has significant potential complications long term, life kind of feels like it just served you a glass of pure, undiluted lemon juice concentrate – both for your child and for you as a parent.

Our son John was diagnosed at OHSU Doernbecher Children’s Hospital in 2014 with Crohn’s Disease, an auto-immune, gastrointestinal disorder characterized by symptoms too uncomfortable to describe in a blog unrelated to the specific condition. After four days in the hospital, a colonoscopy and an upper endoscopy (where the doctor passes a tube with a camera through the mouth, esophagus, stomach and into the small intestine), high doses of numerous drugs, including tremendously effective but highly toxic corticosteroids, our son finally started to feel better after months of having felt progressively worse.

John’s pediatric gastroenterologist at the hospital, Dr. Linda Muir, and the entire nursing staff at Doernbecher were simply amazing. Not only did they make John feel like he mattered, they demonstrated to all of us (John’s parents and his four siblings), that they cared. And they cared not just about John’s physical condition, but about John’s and our collective emotional state. They wanted to provide us with the information we needed to understand what was happening, to provide us the medical options in front of us and to ensure we had the support structure to cope with such a life-changing diagnosis. They recognized and helped us to recognize that the diagnosis had potential to impact not just John, but our whole family.

Dr. Muir has been so tremendously positive in her care for John. Through her encouragement, John has become faithful in taking his medicines (all 11 pills each day). Since his diagnosis, John has had one flare, which Dr. Muir got under control using steroids as a rescue medication. She explained that this was not uncommon and this helped John to understand the importance of adhering to his medication schedule.

Dr. Muir has been so invested in our son’s life and his well-being that she even nominated John for the Nike Doernbecher Freestyle program. After being selected this past spring for the fundraising program, John has been exposed to a remarkable experience, one that he hopes will help him to use his disease to build awareness of Crohn’s and to help other patients better cope with their diagnosis. The caring concern and attention we have received from Doernbecher, Dr. Muir and the staff have added large amounts of water and sugar to life’s offering, thereby significantly sweetening what otherwise could have been a bitter and sour experience.

]]>http://www.ohsu.edu/blogs/doernbecher/2015/07/09/our-lemonade-experience-the-charles-familys-story/feed/1Healing the healer: OHSU Doernbecher physician-in-training launches “The Well Resident”http://www.ohsu.edu/blogs/doernbecher/2014/05/06/healing-the-healer-ohsu-doernbecher-physician-in-training-launches-the-well-resident/
http://www.ohsu.edu/blogs/doernbecher/2014/05/06/healing-the-healer-ohsu-doernbecher-physician-in-training-launches-the-well-resident/#commentsTue, 06 May 2014 21:42:15 +0000http://www.ohsu.edu/blogs/doernbecher/?p=4239Read More]]>It is well-established that over the course of a doctor’s training, there is often not enough time in the day to do everything: cook, sleep, exercise, take care of patients, spend time with loved ones.

In medical school, you’re in the classroom learning how to apply knowledge from the medical textbooks to the less scripted stories of patients. In residency, you are in the hospital more often than in your own home. To find work-life balance through all of this is a challenge; however, it is essential.

To be able to practice medicine to the best of your ability, you must be happy. Despite the recent 80-hour workweek restriction for resident trainees, this is still a fine balancing act to achieve. The question becomes how to weave self-care and wellness into the busy hospital day.

Wellness has been a special passion of mine from early on. Prior to medical school, I completed graduate studies at Georgetown University on the connection between life stress and physical/emotional health, examining various healing modalities like meditation, yoga and guided relaxation. I was determined to make wellness not only a priority on my own journey to becoming a physician, but also an important part of the community in which I trained.

This became an even larger reality when I lost my brother to a terminal illness prior to starting medical school. I often found myself using various stress-reducing techniques and regular exercise to help me get through my biggest challenges. My fellow medical students also were eager to learn more about reducing stress in order to bring more clarity and calm to their busy lives and minds.

When I arrived at OHSU Doernbecher Children’s Hospital for my pediatric residency, I again was determined to create an opportunity for growth, health and balance in my own life, but also in the lives of fellow residents. I was determined to utilize the passion and brilliance of Portland’s wellness culture to support fellow residents.

After thoughtful discussions with OHSU faculty, Graduate Medical Education, the primary care residency programs, combined with the generosity of local Portland businesses and wellness practitioners, the first formal resident wellness curriculum is slated to begin summer 2014.

Called “The Well Resident,” the new curriculum will be offered to all the primary care residents: family medicine, internal medicine and pediatrics. It will address essential wellness topics like sleep, yoga, mindfulness-based stress reduction, cooking and food culture, nutrition and exercise. Speakers will include a sports nutritionist with experience working for the Portland Timbers and Trail Blazers, a local restaurant owner and chef, a well-known Portland-based yoga teacher, a faculty member from University of California San Francisco’s Osher Institute for Integrative Medicine, and a faculty member in the OHSU Department of Pediatrics who specializes in sleep medicine.

We hope each resident will leave the lectures inspired and empowered to find wellness in their own lives. Bob’s Red Mill and Nike are both generously providing take-home items for all the residents to support physician wellness. Lululemon Portland is hosting the opening kick-off event to bring wellness practitioners in the Portland community and resident physicians together in order to form important relationships for future collaborations to best serve our patients.

I am thrilled that the “The Well Resident” has been met with such support and enthusiasm by OHSU. Together, we are the first academic medical center to institute a formal wellness curriculum for primary care residents, which ultimately translates into the highest quality of patient care. In the context of larger health care reform and the new pressures being placed on doctors, this couldn’t be a better time to advocate and educate on self-care and nourishment while at work.

“The Well Resident” is truly the culmination of all of my interests and efforts prior to starting residency. To work and learn at OHSU is a privilege and an honor. I look forward to seeing the program grow to be implemented institutionwide in the near future.

Twin sisters Kate and Kira Smith often talk in an excited duet, finishing each other’s sentences to share an idea or observation. Playful and affectionate, they readily hug and say, “I love you.” They are best friends.

Four years ago the twins were fighting constantly, sometimes cruelly, destroying each other’s treasured possessions. Competition and comparison ruled their relationship. Each felt an uncontrollable compulsion to do exactly what the other was doing. One would not sit down until her twin did. They worried obsessively about who was consuming fewer calories or exercising more. They were dangerously thin.

The twins’ parents, Rebecca and Preston, were desperate to find help for their daughters. But some of the mental health practitioners they spoke with didn’t seem to understand the complexity of twin relationships. Others were quick to offer a diagnosis of “eating disorder,” rather than looking deeper into the root causes of the twins’ behavior.

Life changed when Rebecca was referred to Ajit Jetmalani, M.D. at OHSU Doernbecher Children’s Hospital. Jetmalani leads Doernbecher’s Division of Child and Adolescent Psychiatry. He and his team of mental health specialists recognize that mental and physical health are inextricably linked.

With respect and compassion for each individual, Jetmalani builds patient relationships based upon honesty and trust. For Kate and Kira, these were the keys to finding their way back to a healthy relationship. “Everyone deserves a good doctor like that,” said Kira.

Jetmalani recognized Kate and Kira’s intelligence and intellectual curiosity and treated them accordingly. He diagnosed the twins with anobsessive-compulsive disorder(OCD), explained to them how it affects the brain, and shared his experiences treating other teens with OCD. He patiently but firmly challenged the girls to take small steps toward new behavior, starting with the simple act of sitting down at different times when they arrived at their weekly appointment.

Most importantly, he taught Kate and Kira that OCD was their enemy, not each other. The concept of a battle they had to win resonated with both girls, whose interests include medieval weaponry and female warrior heroines (Kate), and the Victorian era and women’s rights (Kira).

Over time, moments of calm turned into days of calm. The constant fighting stopped. The girls felt happy for the first time in years. Today, Kira and Kate say that they – not OCD – are in control.

The girls had the opportunity to express their gratitude – and their creativity – as participants in this year’s Doernbecher Freestyle program, a collaboration with Nike in which Doernbecher patients design Nike shoes to benefit the hospital. Kate’s shoe is decorated with a coat of arms and the words, “You are stronger than you think you are.” Kira’s features a playing card motif, a reference to Alice in Wonderland and its themes of madness and a key that unlocks a small door.

Parents Rebecca and Preston are deeply thankful for OHSU’s program. “My children were on the side of a cliff, stranded on a little ledge,” said Rebecca. “Dr. Jetmalani picked them up and put them on firm ground.”

Jan O’Dell
OHSU Doernbecher Children’s Hospital Foundation

]]>http://www.ohsu.edu/blogs/doernbecher/2014/01/02/when-mental-illness-pushes-kids-out-of-control-doernbecher-psychiatrists-help-restore-peace/feed/0Special Olympics: Time out of pediatric residencyhttp://www.ohsu.edu/blogs/doernbecher/2013/11/15/special-olympics-time-out-of-pediatric-residency/
http://www.ohsu.edu/blogs/doernbecher/2013/11/15/special-olympics-time-out-of-pediatric-residency/#commentsFri, 15 Nov 2013 15:00:50 +0000http://www.ohsu.edu/blogs/doernbecher/?p=3416Read More]]>There is a reason they call us residents. We do spend the majority of our time “residing” in the hospital. So it is always nice to be able to escape our residency and experience medicine in a community outside the hospital.

A few weekends ago, a group of five residents, including myself, and three supervising physicians made our way to the Nike campus to help out at the Special Olympics MedFest. My first impression was that Nike never does anything on a small scale.

Rain or shine (mostly rain), hundreds of children were set to try their hands, or feet as it may be, at their sport of choice. This included old pros as well as new members to the Special Olympics family. Volunteers were there in spades as well, filling in all the tiny gaps left between the swarming groups of children.

We somehow made it through to the temporary medical clinic, all nicely organized with exam tables, curtains dividing the “rooms,” a triage area supplied with scale and vision charts, and even a small waiting room.

Nursing students from OHSU volunteered their time to obtain vitals as well as perform vision and hearing screens. With our Special Olympics staff shirts proudly worn, we set about to make ourselves comfortable in the clinic.

Soon the athletes began to arrive. We were coached prior to arrival that every child we would see should first be thought of as an athlete and then as a patient. It is a different approach than that which we typically take in clinic, where all patients are primarily just patients.

In many ways, this was a challenging alteration of thought because my brain has been trained to first find the problem before addressing the solution. But there were endless number of interesting solutions, interests and new resolutions. It was fun to see how all the different athletes participated and each to varying capacities. It was fun to see their lives on their turf, not mine.

At the end of our rounds of sports physicals, gentle persuading and medical discussions, we were all happy we had come. If nothing else, it was inspiring to see these athletes succeed and be a part of a very welcoming family.

I would always be happy to help make that happen for anyone, even outside of the hospital.

I was invited to join the Doernbecher Children’s Hospital Foundation board 10 years ago to bring this experience and a fresh perspective to some past fundraising events, hoping to raise awareness and more funds for the hospital.

It was my then 15-year-old son, Connor — an avid sneaker collector — who proposed the idea of connecting Nike’s creative footwear design teams with OHSU Doernbecher patients. Six kids were selected to actually design athletic footwear that would be sold at Nike-owned retail stores and online at Nike.com. Doernbecher Freestyle was born. After a number of sketches, material sessions and prototypes we hold an event each year to feature the Doernbecher patient designers and unveil these six very unique shoes that essentially reflect each kid’s personal story.

After the unveiling, the shoes are offered for sale in New York, Miami, Chicago, Los Angeles, San Francisco, Portland. and more, and to the world online. The results are incredible, with all proceeds going directly to Doernbecher. The kids all say how much they love giving back to a place to which they owe so much. It is a moving experience.

Nike is a company that lives by innovation. The OHSU Doernbecher vision, their research and innovation saves kids’ lives. It is a natural partnership. My colleagues at Nike (more than 6,000 employees touch this project) and I are extremely proud to support one of our nation’s finest children’s hospitals.